End-of-Life Care for Children With Terminal Illness

Not every child is able to recover from a serious illness or injury. Sometimes a disease or condition continues to worsen, despite every attempt by the medical community to help the child get better. Other times, a successful cure might not be available when an illness is too widespread or severe.

When this happens, the primary aim of a child's care shifts from seeking a cure to making the child more physically and emotionally comfortable and as free from pain as possible. This is known as palliative (pronounced pal-lee-ay-tiv or pal-yah-tiv) care. Hospice care is a specific type of palliative care that helps children and families cope with terminal illness.

What Is Hospice Care?

Hospice care, sometimes called end-of-life palliative care, is designed for patients who are in the final stages of a terminal illness. A relatively new phenomenon in the United States, hospice care has grown from a volunteer-led movement to a significant part of the health care system that helps ensure that all dying patients receive comprehensive and compassionate care. Hospice care focuses not only on dying as peacefully, comfortably, and with as much dignity as possible, but also on living as fully as possible until death occurs.

Usually, hospice care is offered to those who are expected to live no longer than 6 months and have stopped receiving curative treatments. The goal of hospice care is not to speed up the process of dying or to slow it down — but rather, to provide the best possible quality of life for dying patients and their families. It focuses on preventing and relieving pain and suffering and easing the fear and anxiety associated with the end of a person's life.

What Services Are Available?

Hospice care services are designed to meet the unique needs of a dying child and his or her family. Children receive pain management and counseling to learn to cope with the inevitable outcome of their condition. Families and loved ones receive support and counseling to help care for their child as well as to cope with the emotional strain of illness, loss, and grief.

At the center of the hospice care team are the child's parents and other family members. Keeping families involved in the decision-making allows them to feel more in control of their child's care. Care is provided by a team of professionals who have knowledge and experience in various disciplines, such as doctors, nurses, social workers, therapists, psychologists, teachers, home health aides, and spiritual advisors. The team also may include community volunteers who have been trained in the unique issues surrounding death and dying and are willing to help in any way they can.

A primary focus of hospice care is palliative care, which includes minimizing pain and other symptoms. Other hospice services for the child and family might include:

emotional support

information and advice

nursing services

nutritional counseling

respite care, which offers temporary relief from the intense strain of hospice care to parents who are caring for children at home

art, music, and play therapy, which helps children and families explore and express their feelings

activities for siblings

spiritual care, such as exploring the meaning of death and helping with religious ceremonies or rituals

practical assistance with everyday tasks

grief counseling and support, which helps parents and other family members through the bereavement process

Depending on the service, it may be offered on an emergent basis, either day or night, but most services can be scheduled in advance based on what is most convenient for families and patients.

Where Is Hospice Care Offered?

Many people think of hospice as a place; however, hospice care services can be provided in different places. Most hospice care is delivered in people's homes by community home health agencies or independently owned hospice programs. However, it also can be provided in hospice care facilities as well as in some hospitals, clinics, and long-term care facilities.

Who Pays for Hospice Care?

Most insurance plans, including Medicare and Medicaid, cover all or part of hospice care. In general, medical coverage is provided for patients who are expected to live for 6 months or less. If a child needs hospice services beyond that point, an insurance company usually will revaluate the child's condition and may continue to provide coverage for hospice care.

Is Hospice Care Right for Your Child?

Many parents are reluctant to accept hospice care for their children because they feel that doing so means that they're giving up hope. Similarly, some health care providers are reluctant to recommend hospice care because they're not willing to give up on finding a cure and want to do all they can to help a child live as long as possible. But hospice care is not about giving up hope; rather, it offers patients and caregivers hope for the best possible quality of life throughout a patient's remaining days.

Choosing hospice care for one's child is, no doubt, the hardest decision a parent will ever make. After you've considered your child's and your family's individual needs, it might help to talk to health care providers, spiritual advisors, social workers, counselors, or family members who can help you sort through your feelings and help you reach a decision. Depending on the age and maturity of your child, he or she also may want to be a part of this decision-making process.

Because this is such a difficult decision, sometimes families do not consider hospice care until shortly before their child dies. But seeking these services earlier in the process lets children and their families receive more of the available help and support.

If you're interested in learning about what hospice services are offered in your area, talk to your health care provider, social worker, or a representative from your local hospital. You also can research local hospice care services through the National Hospice and Palliative Care Organization by calling 1-800-658-8898.